"Look at me:" Portraiture and agency Janet S. Sauer University of Colorado at Colorado Springs E-mail: email@example.com
disability, methodology, portraiture, social justice, special education
Historically, the dominant research paradigms involving the study of people with disabilities involved experimentally designed studies or other medically orientated approaches. This paper examines portraiture as a form of qualitative inquiry offering emancipatory possibilities for children with significant disabilities and transformative positive reinterpretations of disability as a social construct for their teachers and other people in their lives. Three narrative portraits of young people with disabilities were created based on a year-long portraiture study involving the collection of observational data, informal interviews, artifacts, and discourse analysis to capture the "essence" of their humanness. Through an examination of this portrait study and others from across the humanities, this paper provides examples where the "subjects" asserted themselves in ways akin to Giroux's agency (1987) suggesting portraiture might provide a unique and credible avenue to respectfully study and learn more about people with disabilities too often left on the fringe of society.
While the UN Convention on the Rights of Persons with Disabilities specifies the need for participation and inclusion in all aspects of society, even in the richest nations we continue to learn about abuses of our children with disabilities within segregated educational settings 1 making it crucial that researchers, educators, families, policy-makers, and average citizens alike examine the experiences of people with disabilities as a human rights issue (Beratan, 2006; Biklen & Burke, 2006; Goodley & Runswick-Cole, 2011; Terzi, 2005; Theoharis & Causton-Theoharis, 2008). This article suggests portraiture as a form of qualitative research offering emancipatory possibilities for children with disabilities 2 and transformative positive reinterpretations of disability as a social construct for their teachers and other people in their lives. Portraiture is a useful research methodology with a rich contextual frame from which to examine the complexities involved in what we purport to be the respectful inclusive education of all children. Portraiture as a qualitative approach to social science inquiry was developed by Sara Lawrence Lightfoot (1983) as she sought to describe the social, cultural, and historical contexts in high schools. In ways akin to anthropologists and ethnographers, she illustrated the complexities of schooling using the scientific principle of detailed description of daily life, rather than contrived situations. Through a blending of art and science, her "illustrations" are meticulous descriptions of what she saw and heard, "drawing" her interpretations in the written narrative, providing readers with contextualized "portraits" of six different high schools. Although she later published a text outlining the portraiture method (Lawrence-Lightfoot & Davis, 1997), she has not focused her lens on students with disabilities, a marginalized population whose educational experiences are too often left unexamined from a humanistic perspective.
In this paper, I begin by describing the challenges facing researchers interested in documenting social constructions of disability, particularly within educational contexts where systemic oppression of young people with significant disabilities persists. These students are often referred to by education practitioners through labels such as "multiply handicapped," "severe and profound" and "SLIC", meaning Significantly Limited Intellectual Capacity. Next I describe the unique role the arts might provide for reinterpreting these young people as self-determined individuals who attempt to assert themselves when acknowledged and supported. Using examples from my own research and other studies, I then describe how portraiture in action can be a useful tool of inquiry for Disability Studies in Education whereby the subject of the portrait can become a coauthor thus honoring his or her agency. Agency is defined by Webster's dictionary as "the state of being in action or of exerting power." Henry Giroux (1987) explains how human agency works in creating "the production of meaning [within] the dialogue and interaction that mutually constitute the dialectical relationship between human subjectivities and the objective world" (p. 11). A conclusion follows with recommendations to other researchers, practitioners, and families.
Challenges for Educational Research "On the Fringe"
The Reauthorization of the Individuals with Disabilities Education Act of 2004 (IDEA) calls for researchers to employ systematic observation, experimental, or other empirical methods to improve the education for students with disabilities. However, many of the methods and theoretical frameworks available to educational researchers seem to contribute to the marginalization of our students with significant disabilities. Childhood researchers Lewis and Kellet (2005) note, "those who cannot speak or sign may be considered too difficult to include and left on the fringes of the research arena" (p.198). Biklen (2007) argues clinical frames of reference with authoritative assumptions dominate studies of people with disabilities. He contends the clinical frame suggests biologically located answers that lie within the person as opposed to the Disability Studies frame which "demands an accounting for social policy, for cultural definitions, and for political economy in relation to disability" (p.6). For more than twenty years Biklen and other researchers who have studied disability from a socio-cultural perspective have pointed out how clinical frames disempower people with disabilities (Beratan, 2006; Tomlinson, 1982). But how might researchers informed by a Disability Studies theoretical framework, who acknowledge institutional ableism embodied in the educational policies and practices involving students with disabilities conduct social research responsive to IDEA's call for empirical methods?
A Qualitative Approach
Qualitative research methodologies offer greater understanding of students "on the fringe" and a Disability Studies frame provides an alternative, more empowering option of study and interpretation than the dominant clinical experimental approaches. Qualitative methodology, Bogdan and Biklen (2003) suggest, is appropriate for an inquiry into questions asking how things work or what people think. They explain, "if you want to understand the way people think about their world and how those definitions are formed you need to get close to them, to hear them talk and to observe them in their day-to-day lives" (p.31). In general, research techniques such as prolonged engagement and astute observation in natural settings gathered in detailed field-notes allow for a depth and scope of understanding unavailable within experimental designs (Glesne, 1999; Lincoln & Guba, 1985). This becomes important when trying to examine the lived experiences of people with disabilities who might not communicate in conventional terms and whose impairments manifest themselves in highly variable ways. People with disabilities and those of us who interact with them in our daily lives 3 understand the importance of familiarity when negotiating a shared understanding that only comes with prolonged engagement. It is the understanding of the context that oftentimes becomes essential in determining intended meaning. That said, intentionality is a topic of contention even among those of us who consider ourselves to be fluent and articulate communicators without impairment.
As with members of other culturally-marginalized groups, people with disabilities in general, and children with significant disabilities in particular, have historically been denied the opportunity to express their perspectives with few exceptions (Biklen, 2000; Broer, Doyle, and Giangreco, 2005; Erickson & Koppenhaver, 1997; Kliewer & Biklen, 1996, 2001, 2007; Kluth, 2004; Mishler, 1993, Pugach, 2001; Reid & Button, 1995). The voices of young people with significant disabilities have only recently been heard, many through interpretivist qualitative research studies such as Broderick and Kasa-Hendrickson's (2001, 2006) and Rossetti and colleagues' (2008) work with young people with autism. Biklen's (2005) edited book Autism and the myth of the person alone includes works authored by people labeled with autism. Several of the people described in these works refer to their spoken language as unreliable and suggest we focus our attention on their written (or typed) word instead. Peterson (2009) also employed interpretivism in her qualitative study about self-determination in the life of a young African American woman with cerebral palsy and a visual impairment where she incorporated poetry in her efforts to make meaning of the woman's agency. Their written words are the closest we have come to understanding the lived experiences of people on the fringe, but what about those who do not have the access to conventional written communication?
Goode (1994) studied two young girls with limited use of sight and sound resulting from the rubella virus, unintelligible speech, and no communication devices. He used prolonged engagement and systematic observation techniques for data collection to study the girls' experiences and social interactions over a nine month period across multiple settings where the girls lived their daily lives. Though he grappled with "how to use formal language to tell the story of persons themselves without formal language" (1994, p.1), Goode's contextualized descriptions that included the words of family and paid staff provided valuable insight into how societal systems can negatively influence experiences of more complex disability. Similarly, Linneman's (2001) study of four children labeled mentally retarded involved ethnographic description of multiple settings, including spoken and written communication with families, support personnel, and to a degree with the children themselves. Using his field-note data, Linneman illustrates how the concept of mental retardation is socially constructed through service systems including schools. The use of qualitative techniques in these studies offers possibilities for educational researchers to document the lived experiences of young people who are less often described in mainstream research. Although I utilized these same data collection techniques in my year-long study of three young people with significant disabilities, I struggled with how to capture their essence, their talents, and what I came to recognize as their sense of agency. Portraiture methodology offered an approach that mitigated some of these challenges.
A "Blending of Art and Science" in Educational Research Methodology
Qualitative educational researchers acknowledge credibility challenges, but contend "it is always possible for there to be different, equally valid accounts from different perspectives" (Maxwell, 1992, p.283). For decades Elliot Eisner (1999) has made the case for artistic approaches to qualitative research, suggesting a combination of both scientific theory and artistic images in the study of the human condition. Similarly, Lawrence-Lightfoot (2005) explains "The process of creating narrative portraits requires a difficult (sometimes paradoxical) vigilance to empirical description and aesthetic expression" (p.10). Through a "blending of art and science," narrative portraits utilize detailed observational data documented in field-notes (the science) and negotiations of meaning through prolonged interactions to capture the "essence" of a human being (the art). Lawrence-Lightfoot explains:
The portraits are designed to capture the richness, complexity, and dimensionality of human experience in social and cultural context, conveying the perspectives of the people who are negotiating those experiences. The portraits are shaped through dialogue between the portraitist and the subject, each one participating in the drawing of the image (Lawrence-Lightfoot & Davis, 1997, p.3).
Such turn-taking in the negotiation of meaning is similar to the constant-comparative approach in qualitative analysis whereby the researcher begins with data collection, repeatedly reviews the data looking for themes, returns to the site of study to collect more data, followed by further review in a circular manner creating knowledge inductively (Bogdan & Biklen, 2003).
Portraiture's underlying "co-constructive structure" assumes a shared active interpretation of the data, whereby the people who live in the social contexts under study additionally review the data, reflect upon it and offer their own interpretations. In contrast to case studies which tend to objectify the persons of interest, where a person is referred to as a "case," portrait data is not restricted to the researcher alone. Instead, the data is shared with the participants, who are acknowledged for their active role in negotiating meaning and thus the typical power relationship is disrupted. In this sense, portraiture intentionally provides openings for personal transformation. Portraiture offers transformative opportunities for all involved including the portraitist (educational researcher or teacher), the subject of the portrait (in this case the student labeled with a disability along with those who are part of her daily life), and the reader of the final narrative text who interprets the portraitist's rendering.
Portraiture also focuses on "the good" in much the same way as other qualitative researchers seek out positive constructions of people with disabilities from which to study and learn (e.g. Biklen & Burke, 2006; Bogdan & Taylor, 1987; Erickson & Koppenhaver, 1997; Giangreco, Dennis, Cloninger, Edelman, & Schattman, 1993; Kliewer & Biklen, 2007; Wansart, 1995). In the gathering of portrait data described later in this paper, I found other people who played important roles in the lives of my research subjects, or rather participants in my portraits, who subsequently reinterpreted the young people with disabilities in more positive ways. In this manner portraiture challenged the medical model where the "view of our social world magnifies what is wrong and neglects evidence of promise and potential…and resists this tradition-laden effort to document failure" (Lawrence-Lightfoot & Davis, 1997, p.9). Portraiture as a qualitative method serves to "problematize unrecognized assumptions, implications, and consequences of various kinds of educational practice, policy, and research" (AERA, 2009, p.482) with particular regard to marginalized groups of students and those entrusted with their education.
Method: Portraiture in Action
The research methodology of portraiture has contributed understandings of complex ecologies in educational contexts. In her introductory article to an issue of Qualitative Inquiry (2005) dedicated to portraiture, Lawrence-Lightfoot explains how she developed this method of inquiry to fill a need she saw while studying teenagers in the early 1980's. She sought "a text that came as close as possible to the realms of painting with words… [that] capture[s] the texture and nuance of human experience" (p.6). Rather than objectifying the subjects of study, portraiture seeks understanding. Educational researchers subsume their traditional role as expert and negotiate meaning with the primary participants taking the context into consideration, forcing reflective thought about knowledge ownership. As is common in qualitative research, the relationship between the researcher and the participants changes over the course of time. "The definition of a person," write Bogdan and Taylor (1992) "is not determined by either the characteristics of the person or the abstract or cultural meanings attached to the group of which the person is a part, but rather the nature of the relationship between the definer and the defined" (p.276). In these terms, the researcher critically examines the social interactions with and the development of her relationship with the study participants.
Other portrait studies involved teachers as primary participants (Ayers, 1989; Sauer & Ricks, 2009) and students with "mild" disabilities (Connor, 2006; McNeil, 2005) where agency and more complex notions of ecologies such as race and social class were considered. Ayers' (1989) six preschool teachers developed a new self-awareness about themselves upon reviewing the portraits. Similarly, Ricks, while analyzing the discourse in which she participated in schools during her student teaching announced, "I wish I knew then what I know now." Connor (2006) studied eight young adults labeled learning disabled with whom he co-created portraits that revealed tensions concerning race, disability and social class. Connor described a theme that emerged about how some participants felt "contained" by special education. McNeil's (2005) study of three adolescent females diagnosed with attention deficit hyperactive disorder (ADHD) showed challenges they had with trying to develop peer relationships. Chapman (2007) combined portraiture methodology with critical race theory to examine urban school contexts while interrogating social interactions between teachers and students. She contends this combination offers the researcher a way to "embrace these conflicting actions to present an overall picture of determination and agency" (p.160). These studies illustrate how portraiture can lead to re-interpretations allowing for transformative awareness of seeing people in new ways.
Data Collection and Procedures: "This is about me!"
As a mother of a child diagnosed with trisomy 21 (also known as Down syndrome), I took part in community-based family support groups where I announced my interest in recruiting family participants through a one-page study description. After families contacted me, I visited their homes to explain the study in greater detail and garner their voluntary participation, noting they could withdraw at any time. In this way, the participants were recruited using purposeful and snowball sampling (Bogdan & Biklen, 2003; Maxwell, 1998). Over an eight month period I entered the homes, neighborhoods and school environments of David 4 , 10, who was diagnosed with autism, Kari, 17, who was diagnosed with trisomy 21 and Marie, 8, who was diagnosed with Rett syndrome (considered to be part of the autism spectrum); all three were labeled "retarded" by the special education process. I continued communicating with the families for another three months primarily via email and phone calls, documenting each in a contact log. During our initial meeting, when the conversation became dominated by the adults, Kari sat between her parents on the living room couch and interjected, "This [study] is about me!" Her assertion proved to foretell her sense of agency that was to become apparent during the year-long study. I collected descriptive data as a participant observer (Bogdan & Biklen, 2003) recording my weekly visits using field notes, audio and video. Informal interviews were transcribed verbatim and observational field notes were typed with reflective memoranda resulting in nearly a thousand pages of data. Documents included drawings and writings constructed by the participants, copies of their educational records, and videotaped footage and photographs.
For analysis, I used the constant-comparative procedures of simultaneously synthesizing the data collected while also collecting more data as I refined my understanding in an effort to make sense of what I learned (Bogdan & Biklen, 2003; Glesne, 1999). The data was coded and sub-coded into themes. As part of the analysis process, I often shared my interpretations with the participants and sought their feedback. This led Kari, who had since turned eighteen, to request the use of her "real name" instead of the pseudonym I had been using as she read drafts. Kari's request at this point in the study echoed her initial reminder when I sought her participation: "This is about me!" In both cases her comments illustrated the theme of agency (Giroux, 1992) that emerged. As you will see in the portrait excerpts in the following section, although David, Kari, and Marie struggled to negotiate social borders, they sought involvement with and reciprocity from people in various contexts, exuding their sense of agency. Although arguably less than a full co-construction, these three portraits engaged the primary participants in ways that acknowledged their agency and thus seemed to provide a richer and more complex interpretation of the participants' lives than other methodological approaches would have offered.
Findings: Three Portraits of Agency
Ten-year-old David hardly spoke. When addressed directly, he would usually respond using a conventional cadence and inflection, but the words were imperceptible. He frequently said "Burrr…eeee" or "EEE." While playing with his father one day I heard him repeat "Dad, Dad, Dad." His family told me he could sing along to the Beatles' Yellow Submarine and once during Sunday church services while sitting beside his mother, David suddenly said aloud and with clarity, "I love you, Mom." More often though, David's effort to vocalize specific words seemed painstaking and exhausting as he struggled to connect his thoughts with his body. His mother explained, "The words get stuck." He had an electronic voice output communication device called a Dynavox, but it was rarely used. In the special education classroom in the local elementary school where David spent most of his weekdays, they used a picture schedule 5 on the wall to tell him the day's sequence of activities. The family had just begun using a picture schedule displayed in their kitchen. Yet, in both instances the pictures were limited primarily to functional vocabulary, thus restricting David's opportunities for initiating conversation or developing reciprocal communication. A young woman who supported David in the community and sometimes at home as a "respite care worker" commented, "He understands a lot more than you think…if you just talk to him [and] pay attention to his particular gestures." On the one hand, her comments were optimistic, and presumed competence. On the other hand, the very term used to describe her paid relationship to David, "respite", means families "take a break" from their children with disabilities (see Disability.gov), discloses underlying structures based on assumptions of deficit.
Though David's mother acknowledged he "communicates with behavior," his behaviors were not always interpreted as meaningful. For example, despite his willingness to share his body sock 6 with family and classmates by allowing them to climb inside with him, David's label of autism defined him as unsocial and, according to his special education teacher, "in his own world." Also, David's difficulty with keeping his clothes on and need for frequent movement were often interpreted as "problem behaviors in need of intervention" by the educational personnel. His younger brother explained to me he thought David was probably just hot, but his mother thought it might have been "his way to protest." Her comment suggested an underlying motivation far more intellectual and cunning than what was reflected in his individual educational program. Portraiture readily captured these kinds of exceptions. Other examples included when he drew his self-portrait with me, when he danced with his classmates in music class, and in kindergarten when he sought out a peer who read to him. In one situation David's mother drew a picture of him and titled it "David." He subsequently drew a picture of a person's head with facial features, which his mother initially thought was of her and thus began to title it "Mom," however he immediately jumped up and began hopping, shaking his hands, and making high-pitched sounds, all behaviors those familiar with him knew to indicate he was upset. Then, when his mother crossed out her name and wrote "David" above his drawing, he calmed down and rejoined us drawing on the floor.
Cazden (2001) studied the opportunities students were provided to speak in classroom contexts. She writes, "The most important asymmetry in the rights and obligations of teachers and students is over control of the right to speak" (p.82). Cazden's idea of speaking rights is a useful idea for discussing David's communication. It suggests that David should have had the right to speak, or in his case, use whatever means he might have to communicate, to share his thoughts and feelings with others. The other part of speaking rights, Cazden asserts, is listening responsibilities, where teachers (and others) listen and respond to students' voices. Thus, Cazden suggests teachers (and researchers) pay attention to the ways in which people talk to and listen to students (or participants). Therefore, I looked for occasions in which people had expectations for David to "speak" and noted how they listened to what David was "saying."
Outside his family, few people talked directly to David; those who did sometimes used an altered cadence (somewhat stilted), a higher pitch, and/or shortened sentences. My observations of the teachers in David's "integrated" classrooms indicated they did not address him directly nor ask him to contribute to class discussions. The adults in David's special education classroom described students as "good" if they immediately complied with verbal directives or if they were quietly and independently working; students were described as "bad" if they got up from their desks or made vocalizations. Therefore, David was generally discouraged from talking in his typical school day. Interestingly, a few paid professionals and his family tended to give voice to their interpretations of David's vocalizations and behaviors. For instance, while looking through the family photo album at the kitchen table during a visit, David immediately smiled and made sounds of excitement upon seeing his childhood picture, to which his mother exclaimed "Oh, I'm so excited! Look at me!" In this way, David's mother offered a translation for me of what she thought David was "saying."
In summary, David's portrait illustrates a complicated boy who struggled against limitations and assumptions the educational and related service systems seemed to set up in order to negotiate relationships. Despite being described by his special education teacher as "being in his own world," she offered alternative examples where David and some peers initiated communication with one another. David's family interpreted his behaviors as intentional and meaningful, even offering the idea that he was protesting against situations where he was being misinterpreted. The co-constructive nature of portraiture was best exemplified during the drawings of the self-portrait where David, his mother, and I reinterpreted his actions through a delicate dance of observation, active listening, and the willingness to rethink our initial assumptions. However, I must admit that I did not relinquish my more authoritative role as researcher to the same extent with David as I did with Kari.
Seventeen-year-old Kari's speech was discernable to those who knew her and she was quick to assert herself verbally. During my initial explanation of the study to her family, she declared, "This [study] is about me." When I entered her home one day she stated, "My house, my rules." Her unconventional behaviors, such as acting out a scene from a play or movie in public, might very well have been part of her sharing her feelings at the moment with me, but they could just as likely have been her efforts to push me back, to affirm her equal status in our relationship, or even, to take the lead in the project. Once, I expressed my discomfort with Kari's public display of loud and socially unconventional behaviors to which she responded "truce" while she took my hand in hers. When I asked her father about Kari's comments and public performances, he referred to it as "teasing" but acknowledged, "It's just hard to tell." Indeed, as with David, I found these young people exemplified research participants Lewis and Kellet (2005) thought of as difficult to understand.
Despite her early inclusive educational experiences, Kari's schooling became increasingly segregated as she grew older. The exception was her participation in theater. Musical theater was open to her in large measure because her father's active role in the schools' performing arts curriculum, not necessarily because it was common practice in the district. During this study Kari's parents began to question the rationale behind her school's focus on non-academic curricular activities for their daughter and they sought Kari's input in revising her individualized education program. "I took [photography] because I wanted to take different classes, to be with different people" Kari said in between sips of her coffee drink during one of our visits to a trendy coffee shop. "I want to be different," she explained, indicating a desire to be different from her classmates in the Life Skills classes where she and other students with similar diagnoses were instructed in window washing and sweeping floors. After asserting herself, Kari and her parents changed Kari's course schedule to include art, speech, choir, and U.S. Government.
Over the year we spent together, Kari wrote extensively, and since the conclusion of the study she continued to correspond with me using email me and handwritten cards, and the following year we co-presented this research at a national conference (Sauer & Fordice, 2008). Sometimes she wrote scripts mixing quotes from plays (she regularly acted in annual theater productions) and song lyrics with real life familiar people including me as characters. She once extemporaneously crafted a song directed at me when I arrived at her home to find her singing aloud while looking at the mirror and holding a broom as a microphone. "I'm a pop diva," she told me and when writing what we referred to as her "biography story," she began with "Singing is what I do." Though met with mixed responses, Kari consistently engaged literacy and the performing arts as tools for negotiating social membership and accessing academics.
I soon joined the few people interested in developing a reciprocal relationship with Kari and became comfortable enough within the relationship not to be bothered by the socially "appropriate" expectations of conversations one might expect of an older teenager. Her family suggested that the development of her reciprocal relationships "rests almost entirely on the other party," that the person needs sophistication and a "sarcastic palate" in order to negotiate shared understanding with her. I found our shared background in theater arts and knowledge of current pop culture to be helpful in interpreting her communication. She often redirected conversations away from those I conjured up and after a few months of regularly spending time together with the voice recorder left conspicuously on a counter, one day she picked up the recorder and began a monologue about herself. Relinquishing control of the conversation, the activity, and/or my research tools (i.e. pen, notebook, voice recorder, computer) was difficult for me but I soon realized how much more I could learn from giving her the recorder and letting her record anything from her daily life she so chose to record. Kari's assertions and her family's comments directly impacted the study. I subsequently bought more recorders and gave one to each participant, the transcriptions of which revealed entirely new collections of data that seemed far less inhibited than those recordings I had collected over several months during my visits.
Marie was eight years old and she attended her rural neighborhood school alongside her typical peers for most of her school days. As part of her special education program, for less than an hour each day, she would sing her spelling words while swinging in the gym locker room or work individually with special education staff on early literacy and math skills. Although her speech was similar to David's in that her words were not always discernable, Marie often spoke or sang songs offering an almost continuous monologue alongside her near-constant movements. Unlike David, she did not appear to struggle with vocalizations and in many ways she expressed herself in ways more similar to Kari. Marie had a loud voice and she appeared to be aware of the power it provided to call attention to herself and get what she sought after. In school I observed a number of occasions where Marie raised her hand while calling out "Look at me!" During a field trip I observed her warning her classmates of the dangerous stairs: "Guys, careful. Watch step." Her teacher told me, "She'll be a great hall monitor."
During my initial home visit her mother commented, "Marie loves to be part of the action," which was an apt way to describe Marie's involvement in her family, the school, and the neighborhood community. She played alongside her three younger siblings and her classmates. The following vignette illustrates her active role in negotiations. I joined Marie and one of her "typical" classmates at the park and library one day. The girls took turns using verbal and non-verbal communication to negotiate meaning without apparent difficulty. "I [am] here," Marie called out to her friend at the playground. "Look at me…I watch you. You do it" Marie voiced, indicating the friend should be the first to slide down. After a while the friend asked Marie "What do you want to do?" to which Marie responded, "I don't know, Read!" At this point the girls left the playground and entered the library where they read books. Marie walked, talked, and played with an air of confidence that seemed to help her in negotiating reciprocal relationships.
When given the opportunity to draw or write, Marie seemed filled with expressive language and she usually covered the paper with letter-like marks while she talked, sometimes narrating her stories with settings and characters. One teacher associate, however, expressed frustration with Marie's persistence with writing, commenting, "I sometimes have trouble with Marie's writing." Such comments echoed those from David's teachers indicating Marie's communicative efforts were not always valued. This stance conflicts with the stated purpose of education to support students' language and literacy and it contrasts with critical theorists who contend literacy is a right and has the power "to reconstitute their relationship with the wider society" (Giroux, 1987, p.7). Though Marie had few intelligible words, her oft-heard refrains "Look at me" and "I do it [my]self" were used emphatically and, like David's behavioral protests, suggested she sought a more powerful and self-directed role in renegotiating her position in society.
Marie's agency emerged long before my study began, early in her schooling when, as her special education teacher recalled she had tried to remove Marie from her general education kindergarten classroom. "There were times we had real battles going down [to the special education room] because she kept wanting to be with the kids [in her class]." During her recollection the teacher acknowledged the irony of the situation and continued in a self-depreciating way, "And it only took me like 3 to 4 weeks to figure out that she needed to be in the [general education] room… she's telling me this. Why didn't I pick up on it?" Marie's teacher admonished herself for not listening deeply to Marie, who had used the non-verbal communication available to her at that time to express her preference to remain in the general classroom. As Marie's friend and family seemed to understand with little effort, and her teacher came to understand upon reflection and my questioning, Marie's agency deserved attention. Her mother aptly explained, "You're not trying to work with a syndrome; you're trying to work with a little girl."
Agency and Portraiture
The "little girl" Marie's mother saw in her daughter contrasted with the diagnostic label given her by the educational system. "Look at me!" Marie demanded of her teachers and classmates, echoing her mother's sentiment. "My house, my rules," Kari declared when I visited her home. David protested visibly when his mother first titled his portrait drawing "Mom" and only calmed down when she reconsidered the situation and retitled it "David." Portraits are rendered to "convey the perspectives of the people who are negotiating those experiences," write Lawrence-Lightfoot and Davis, (1997); they "are shaped through dialogue between the portraitist and the subject" (p.3). Kari asserted herself during one of our first meetings where she reminded her parents and me, "This [study] is about me." Kari's words reminded me of the challenge facing young people with significant disabilities too often left on the fringe of educational research or who if they are the focus of studies, are viewed as objects through a medical lens where deficits are highlighted.
Although Kari spoke easily, it was not productive to engage in the more common research practice of an interview with her (or the other primary participants) in order to explore their experiences and perspectives. As it is with many young people, Kari rarely answered direct questions, unless they involved short simple answers about music or food preferences. A traditional interview did not offer the co-constructive nature of negotiating meaning that I sought in my study (Sauer, 2007). Rather, the long-term engagement in multiple naturally-occurring contexts utilized in qualitative methodology enabled me to become familiar with the communicative nuances indicative of young people with significant disabilities. The process of sharing my interpretations with the participants, including their families, friends, and teachers, broadened the opportunities for exploring and negotiating meanings. This process, along with the portraiture practice of seeing the good in situations, created a condition where the pattern of agency actions on behalf of David, Kari, and Marie emerged more clearly. Oftentimes these agency actions were revealed in courses and contexts based in the arts (Sauer, in press). Furthermore, through power sharing with my participants, such as when I relinquished my voice recorder to Kari after she snuck it away from me, I learned far more from her and from the other participants to whom I subsequently gave voice recorders because we were no longer constricted by place, time, or the traditional roles dictated by most research practices.
Kari's family indicated the development of a reciprocal relationship with her depended "almost entirely on the other party," suggesting the teacher, the researcher, or in this case the portraitist played a crucial role in interpreting her communication. Unlike Kari, neither Marie nor David had developed literacy in ways that could readily serve their communicative efforts, something not uncommon among students with disabilities (Kliewer & Biklen, 2007; Kluth & Darmody-Laham, 2003). Also, David's agency seemed to have been acknowledged to a lesser extent than the other two. It is unclear how their facility with verbal or written language impacted this or their individual educational plans, but David had fewer avenues to generate conventional communication, and fewer opportunities to learn and socialize among his typical peers than either Marie or Kari. Interestingly, it was primarily through the arts that all three young people were most able to initiate communication and exercise their independence. My assumption that all three young people with significant disabilities had experiences worth attending to, that there was value in following their lead, and my willingness to relinquish control of the researcher-participant relationship allowed me to see their actions of agency. The co-constructive nature of this portraiture study illustrated the dynamic Bogdan and Taylor (1992) described in the process of how a person is defined through their interactions.
Discussion and Recommendations
My portraiture study of the co-construction of meaning in reciprocal relationships (Sauer, 2007) illustrated three stories of agency, most clearly apparent in Kari's portrait where she challenged the dominant subject-researcher paradigm and forced me to reinterpret our roles and alter the power-sharing structure. Her actions, here described as enacting a sense of agency (Giroux, 1987), suggest an awareness of and resistance toward the oppressive nature of social contexts so often experienced by people with significant disabilities, including school and even the researcher-subject experience. Their access to the arts, particularly music, allowed me and others in their families and communities to see their meaning-making, a theme described in another paper. This, in turn, led to positive reciprocal relationships where hierarchal structures such as those intended to serve students with disabilities were questioned. Using qualitative research techniques that approach inquiry through the arts, such as in portraiture, where the research participants are provided with opportunities to negotiate meaning through art-based experiences, brought forth the stories of children often considered "on the fringe" and too difficult to study (Lewis & Kellet, 2005). Portraiture, with its blending of art and science, and co-constructive nature, allowed this researcher to engage these participants in ways that revealed their sense of agency. Acknowledging their sense of agency and relinquishing some of the power typically associated with educational researchers, we gain a greater sense of their life experiences. Portraiture research addresses recent American Educational Research Association (AERA) standards for reporting on humanities-oriented research (2009), which states its "central purpose…has been the exploration and understanding of forms of human existence…[and] undertakes investigations into the relationships among…the just society…and concepts of self, knowledge and its grounds, and the arts and their appreciation" (p.482).
This paper highlights a few studies illustrating power-sharing and renegotiating meaning. We need educational researchers and teachers who practice action research to take up portraiture studies of children with significant disabilities so that a greater understanding of their experiences will develop. Further examination of positive examples is necessary, where students' artistic talents are realized and their agency honored. We need to expand upon action research studies such as those documented in Wansart's (1995) study of teachers, who after focusing their attention to their students' strengths, began to see their students in more capable ways resulting in improved outcomes. Despite English's (2000) critique of the power imbalance in portraiture, other researchers have found it to be useful in addressing current issues of power regarding race in schools (Chapman, 2007; Connor, 2006). One does not often think of research in and of itself as leading to emancipation for its subjects of study, but portraiture's unique combination of art and science, along with its interventionist approach offers a viable way to "give voice" to people "on the fringe" and assist in their reinterpretation as people with (dis)Abilities.
Families, teachers, educational leaders, and others interested in advancing the lived experiences of our young people who use unconventional communication must reexamine our interactions. A reexamination calls for critical reflection. In their study of how to prepare school leaders responsive to social justice issues, Theoharis and Causton-Theoharis (2008) suggest educational leaders be provided with an understanding of oppression and encouraged to develop three critical dispositions: taking a global theoretical perspective, possessing a bold, imaginative vision, and embracing a sense of agency. Certainly these dispositions are not limited to school leaders, and I suggest we adopt these recommendations for a broader audience. What if more people were to learn how children with disabilities are socialized in oppressive systems? What if communities realized social justice means "creating equity for all students…it is not just special education" (Theoharis & Causton-Theoharis, 2008, p.236)? With greater awareness individuals may be more likely to embrace not only their own sense of agency, but also the agency of young people with (and without) disabilities. Reflective practices involving critical dispositions are intricately involved in the negotiations of shared meaning and power in developing respectful relationships with marginalized groups.
Given current school budget constraints, students with disabilities may lose their access to the arts curriculum and pedagogy, thus restricting access to literacy and communication that provides emancipatory opportunities. Therefore, I suggest advocates for students with disabilities become proactive in calling for greater access to the arts and take note of how these contexts might be used in the development of positive reciprocal relationships, not only between them as research participants in educational studies, but as citizens. In honor of the voices of the three young people with whom I spent a year across many contexts, I conclude with hope that my colleagues and I do not forget the words of Kari: "This is about me!"
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Prior to joining the UCCS faculty, Dr. Sauer developed and taught in a Professional Development School for special education elementary education majors at Clarke College in Dubuque, Iowa. She earned her doctorate in Special Education from the University of Northern Iowa where she also worked for the Inclusive Early Childhood Literate Community Project directed by Chris Kliewer. Her research interests focus on examining positive relationships in inclusive contexts, the nature of creativity as access to literacy, and interdisciplinary collaboration. Janet's advocacy efforts for the inclusion of students with disabilities in community and educational contexts have also led her to explore co-constructions in research methodology.
Author note: The research data was collected as part of my doctoral program at the University of Northern Iowa under the direction of Dr. Chris Kliewer, Dr. Christi Kasa, Dr. Amy Staples, Dr. Ken Bleile, and Dr. Rick Traw. Special thanks to them, the children and their families.
For more information see http://www.cnn.com/2009/POLITICS/05/19/schools.abuse/index.html?iref=newssearch and http://www.sgul.ac.uk/media/news-archive/2009-1/new-baroness-highlights-european-drive-to-improve-care-for-children-and-young-people-with-intellectual-disabilities/.
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I use person-first wording purposefully throughout this paper with intended respect for the individual's various social identities; the disability is not the defining characteristic of the person. Other similar expressions such as "students with significant disabilities" or "people with complex differences" are used interchangeably and reflect the evolving discourse in disability studies literature where self-advocates, teachers, families, and scholars debate whether to reject or take on the labels ascribed to them in ways that echo other marginalized groups such as referring to American Indians or Native Americans as Indigenous Peoples, the Queer Movement, or the Black is Beautiful identity discussions.
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In addition to being an educational researcher with experience teaching in special education, I am the mother of a teenaged son with speech and communication impairments resulting from trisomy 21.
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All names of participants are pseudonyms except for Kari, who upon reading the study requested that her real name be used. She has since become adult age and therefore for this article her request has been granted.
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Picture schedules refer to three or four same-sized pictures that are assembled in sequence, to match corresponding activities. The pictures are laminated, backed with Velcro, and attached to a stiff rectangular piece of paper, like a bookmark, for ease of changing and re-use. For example, one might put a picture of a person eating first, followed by a picture of the computer, and then a picture of the toilet. It could also be used to tell David who was coming, where they were going, or they might offer him two pictures from which he could choose a preference.
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A body sock is a five foot long, thin piece of stretchy nylon material. A person climbs inside it and moves around. There is an opening for a person's head and strips of mesh to provide air flow. It is often used with therapeutic intentions to help with sensory integration.
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